Living with MS: Local woman details struggle

Phyllis Snider at Aldi on Saturday, February 9, 2013, in Ocala, Florida.

Lee Ferinden/Star-Banner

By Charles LawrenceCorrespondent

Published: Monday, February 11, 2013 at 10:51 a.m.

Last Modified: Monday, February 11, 2013 at 10:51 a.m.

Clarification: According to Dr. Kim, CCSVI surgery has the potential of fatalities. As quoted in this article, Dr. Kim provided a different characterization of the surgery.

Phyllis Snider woke up one day in 2007, blind in one eye. Alarmed, she made an appointment with her doctor. It wasn't until late 2008 that a physician diagnosed her with multiple sclerosis.

MS is a neurological disorder where the immune system attacks the central nervous system. If affects about 400,000 people in the U.S. and 2.1 million people worldwide.

According to the National MS Society, some symptoms of MS include fatigue, abnormal gait, visual problems, bowel and bladder incontinence, numbness, dizziness/vertigo, pain and depression.

Snider developed the relapsing/remitting type of MS, where there are exacerbations of symptoms and periods of time where there are few or no symptoms. The other type of MS is progressive, a more disabling condition where symptoms worsen over time. Many people must use a wheelchair and are often unable to meet their own basic needs.

A serious fall several years ago left Snider further incapacitated, needing two canes to get around the house and a wheelchair or power scooter when she goes out. Before her current treatment, Snider's MS used to only exacerbate the problem.

Snider stopped working sometime before moving to the Ocala area three years ago from Wisconsin. She did customer service work for graphic designers and worked with people who did labels for such big names as Kraft, Heinz and Smucker's.

Snider is married and has a daughter, son and two grandchildren who live in Wisconsin and Canada. When she broke the MS diagnosis to her family, they were supportive.

“They prayed for me, and I have a husband (Gary) who is very good to me. He massages my legs every night which helps me with walking,” Snider said.

Mentioning current symptoms, Snider said, “If I didn't have my fall, I almost wouldn't know I have MS. There are gait problems which I deal with.”

When asked how she passes the time, Snider said, “I do a lot of research on the computer. I research everything.”

Such research led her to the discovery of a controversial new surgery for MS patients: CCSVI, which stands for chronic cerebrospinal venous insufficiency. Snider had the surgery at Shands at the University of Florida in Gainesville in 2010.

Typically, MS patients rely on injections of medication that help minimize the attacks the disease wages on the central nervous system. The injections, Snider said, were debilitating and left her with lumps on her skin.

Through her additional computer research, she found a new pill, LDN (low-dose naltrexone), which has some anecdotal evidence of being a wonder drug for all kinds of ailments, including MS.

According to Dr. Lance Kim, a neurologist at the Florida Neurological Center in Ocala, “LDN has some promising results. It was originally used to treat narcotic addicts, but in low doses has a positive effect for MS patients. The CCSVI surgery tries to improve the drainage of the venous blood from the brain to the heart. It's not approved by the FDA. It's a high-risk procedure with high fatalities.”

“Lots of neurologists don't want to give out LDN,” Snider said. “They want to stick with the shots, but I don't take shots anymore. I've lost the MS brain fog and have almost no MS symptoms.”

While her symptoms are minimized through surgery and pills, Snider said she'd like to try stem cell therapy “just to see if it works.”

Snider said she does most of her socializing on the computer and has joined MS Facebook groups and made friends all over the world.

She belongs to an Ocala MS support group, which brings in speakers and makes life interesting. “We keep up with each other,” she said.

“There is alternative medicine that doctors don't want to tell you about. Do your research on your own illness. Diet is very important. No dairy products,” she said.

“I have a pretty good quality of life considering I can't get out on the golf course, because I love golf.”

“I have MS,” she said, “but MS doesn't have me. I'll do anything to beat it. It's a disease you have to keep fighting.”

<p><i>Clarification: According to Dr. Kim, CCSVI surgery has the potential of fatalities. As quoted in this article, Dr. Kim provided a different characterization of the surgery.</i></p><p>Phyllis Snider woke up one day in 2007, blind in one eye. Alarmed, she made an appointment with her doctor. It wasn't until late 2008 that a physician diagnosed her with multiple sclerosis.</p><p>MS is a neurological disorder where the immune system attacks the central nervous system. If affects about 400,000 people in the U.S. and 2.1 million people worldwide.</p><p>According to the National MS Society, some symptoms of MS include fatigue, abnormal gait, visual problems, bowel and bladder incontinence, numbness, dizziness/vertigo, pain and depression.</p><p>Snider developed the relapsing/remitting type of MS, where there are exacerbations of symptoms and periods of time where there are few or no symptoms. The other type of MS is progressive, a more disabling condition where symptoms worsen over time. Many people must use a wheelchair and are often unable to meet their own basic needs.</p><p>A serious fall several years ago left Snider further incapacitated, needing two canes to get around the house and a wheelchair or power scooter when she goes out. Before her current treatment, Snider's MS used to only exacerbate the problem.</p><p>Snider stopped working sometime before moving to the Ocala area three years ago from Wisconsin. She did customer service work for graphic designers and worked with people who did labels for such big names as Kraft, Heinz and Smucker's.</p><p>Snider is married and has a daughter, son and two grandchildren who live in Wisconsin and Canada. When she broke the MS diagnosis to her family, they were supportive.</p><p>“They prayed for me, and I have a husband (Gary) who is very good to me. He massages my legs every night which helps me with walking,” Snider said.</p><p>Mentioning current symptoms, Snider said, “If I didn't have my fall, I almost wouldn't know I have MS. There are gait problems which I deal with.”</p><p>When asked how she passes the time, Snider said, “I do a lot of research on the computer. I research everything.”</p><p>Such research led her to the discovery of a controversial new surgery for MS patients: CCSVI, which stands for chronic cerebrospinal venous insufficiency. Snider had the surgery at Shands at the University of Florida in Gainesville in 2010.</p><p>Typically, MS patients rely on injections of medication that help minimize the attacks the disease wages on the central nervous system. The injections, Snider said, were debilitating and left her with lumps on her skin.</p><p>Through her additional computer research, she found a new pill, LDN (low-dose naltrexone), which has some anecdotal evidence of being a wonder drug for all kinds of ailments, including MS.</p><p>According to Dr. Lance Kim, a neurologist at the Florida Neurological Center in Ocala, “LDN has some promising results. It was originally used to treat narcotic addicts, but in low doses has a positive effect for MS patients. The CCSVI surgery tries to improve the drainage of the venous blood from the brain to the heart. It's not approved by the FDA. It's a high-risk procedure with high fatalities.”</p><p>“Lots of neurologists don't want to give out LDN,” Snider said. “They want to stick with the shots, but I don't take shots anymore. I've lost the MS brain fog and have almost no MS symptoms.”</p><p>While her symptoms are minimized through surgery and pills, Snider said she'd like to try stem cell therapy “just to see if it works.”</p><p>Snider said she does most of her socializing on the computer and has joined MS Facebook groups and made friends all over the world.</p><p>She belongs to an Ocala MS support group, which brings in speakers and makes life interesting. “We keep up with each other,” she said.</p><p>“There is alternative medicine that doctors don't want to tell you about. Do your research on your own illness. Diet is very important. No dairy products,” she said.</p><p>“I have a pretty good quality of life considering I can't get out on the golf course, because I love golf.”</p><p>“I have MS,” she said, “but MS doesn't have me. I'll do anything to beat it. It's a disease you have to keep fighting.”</p><p>The Ocala MS Support Group can be found at www.mcmsgroup.com.</p>